Rev. Latino-Am.

Enfermagem Original Article

2013 Sept.-Oct.;21(5):1022-9
www.eerp.usp.br/rlae

The experience of the illness and of the treatment for the person with
systemic arterial hypertension: an ethnographic study1

Silvana Maria Coelho Leite Fava2

Márcia Maria Fontão Zago3
Maria Suely Nogueira3
Eliza Maria Rezende Dázio4

Objective: to interpret the meanings of the experience of the condition and of the treatment
among people with arterial hypertension. Method: the authors adopted the frames of reference
of interpretive and medical anthropology and of the ethnographic method. 22 people with arterial
hypertension, and 10 Family Health Strategy health workers, all from Minas Gerais, participated.
The authors used interviews, participant observation, focus groups, field diaries and analysis of
medical records. Ethical precepts were respected. Results: two nuclei of meaning emerged: “The
condition as an expression of way of living”, and “The perspective of the cure of the condition”.
Nervous problems represent the nosological and symptomatic categories, caused by the urban
way of living. The participants are supported by the belief of the curing of the problem. The family,
spirituality and religion constitute social support networks. The therapeutic routes interpenetrate
for the cure of the problem. The ‘folk’ health subsystem constitutes an important route because
it provides better well-being and remission of the symptoms. Conclusion: the gaps evidenced
between the points of view of the health professionals and the interviewees allow one to re-
think the praxis so as to provide comprehensive, contextualized and humanized care, which
encourages the people’s potential for living, for empowerment, and for self-care.

Descriptors: Hypertension; Culture; Nursing; Anthropology, Medical; Patient Compliance.

1
Paper extracted from doctoral dissertation “Os significados da experiência da doença e do tratamento para a pessoa com hipertensão arterial
e o contexto do sistema de cuidado à saúde: um estudo etnográfico” presented to Escola de Enfermagem de Ribeirão Preto, Universidade
de São Paulo, WHO Collaborating Centre for Nursing Research Development, Ribeirão Preto, SP, Brazil. Supported by Conselho Nacional de
Desenvolvimento Científico e Tecnológico (CNPq), process # 143026/2009-7.
2
PhD, Associate Professor, Escola de Enfermagem, Universidade Federal de Alfenas, Alfenas, MG, Brazil.
3
PhD, Associate Professor, Escola de Enfermagem de Ribeirão Preto, Universidade de São Paulo, WHO Collaborating Centre for Nursing Research
Development, Ribeirão Preto, SP, Brazil.
4
PhD, Adjunct Professor, Escola de Enfermagem, Universidade Federal de Alfenas, Alfenas, MG, Brazil.

Corresponding Author:
Silvana Maria Coelho Leite Fava
Universidade Federal de Alfenas. Escola de Enfermagem
Rua Gabriel Monteiro da Silva, 700
Centro
CEP: 37130-000, Alfenas, MG, Brasil
E-mail: silvanalf2005@yahoo.com.br
 Fava SMCL, Zago MMF, Nogueira MS, Dázio EMR.
Introduction
At the present time, nursing is facing great
challenges, including dealing with the complexity of the
human being with chronic conditions such as Systemic
Arterial Hypertension (SAH). SAH is a multifactorial
clinical condition, characterized by high and sustained
levels of arterial pressure (AP). Its clinical criteria, in
individuals over 18 years of age, are tensional levels
equal to or greater than 140 mmHg x 90mmHg(1).
SAH has specific characteristics which influence the
perception and the co-existence of the person with
the illness. The chance nature of the discovery of the
condition, the atemporality of the phases of remission
and exacerbations , the long period of latency and the
(2)
long period of time with no symptoms(3), the label of the
condition which has a negative effect on well-being(4),
accompanied by manifestations and loss of social well-
being(5), and the medicalization(6) bring significant
repercussions on how life is seen. In this way, the condition
changes the relationship the person has with themselves
and with the world, which influences the reconstruction
of their identity. SAH causes significant transformations
in the people’s lives, in the psychological, family, social
or economic spheres, due to the possibility of a long-
term health problem. These transformations back up
the idea that questions relevant to the condition cannot
be analyzed in isolation from the other dimensions of
social life, mediated and permeated by culture, which
confers meaning on these experiences(7). In the care for
the person with SAH, the nurse needs to participate in
the processes of construction of knowledge so as to
assimilate and use innovations – whether technological
or humanistic – in a balanced way, such that she may
offer the person conditions to carry out self-care in
the way that is most satisfactory to their life context.
Throughout their professional activities, as lecturers
and an extension project coordinator, based on
actions grounded in the principle of the indissociability
of teaching, research and extension, with views to
education and health care for people with SAH, and on
studies resulting from these actions(8-10), the authors
have identified that problems related to adherence to
treatment are not restricted only to the physical sphere
and to pharmacological therapy – also implicit are
life experience and the subjectivity in the process of
becoming ill and caring for oneself. The authors noticed
that the ways of thinking and acting of people with
SAH, which may be translated by the experience of the
illness, are understood and valued little by the health
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1023
professionals. We observed that these studies partially
respond to our concerns, as we continue to experience
situations which create expectations and distress which
translate into the following questions: How do they
interpret the condition? How do they experience falling
ill? How is the healthcare system shaped? In order to
respond to these concerns, we sought to combine other
frames of reference besides the biological one, as it is
recognized that the experience of the condition and the
actions necessary for the adherence to treatment and
care in the long term are profoundly interwoven with the
culture – that is, with how people live, with their habits,
routines, and the rituals in their lives.
In interpretive anthropology(11) and medical
anthropology we found frames of reference which
enabled us to find answers, as these have as objectives
to observe, describe, analyze and interpret cultural
systems based on the viewpoints of their members.
Anthropology is considered a science of difference
and diversity, which allows one to develop a critical
perspective in the face of our more fundamental
‘truths’, favoring the construction of a new approach.
It is concerned with studying the characteristics of
people in society, with a focus on the culture, with its
systems of symbols, ideas and meanings, which allows
one to understand human behavior in a broader way,
taking into consideration life’s various dimensions.
Anthropology brings important contributions to the
functioning of the nurse because it makes it possible
to analyze how the person lives in their daily life, their
interpretations regarding the health-illness process, the
ways of living and the treatment choices. As regards
medical anthropology, one of its main exponents(12)
describes the “professional” and “cultural” constructions
of condition in his Explanatory Model (EM). One finds
the distinction between disease “condition-process” as
the abnormalities of the biological and/or psychological
processes, and the illness – the “experienced condition”,
which refers to the psycho-social experience of the
condition, which is centered in the subjectivity, which
includes the condition’s cultural, social and personal
elements. We learned that the experience of the
condition is molded by the socio-cultural context which
determines cultural and symbolical forms of expression
for interpreting the condition, the way in which one feels
and expresses one’s symptoms, uses curative resources
and stops these from changing one’s way of living. The
search for treatment for SAH depends on the meanings
constructed throughout life, which often come into
confrontation with the actions prescribed by the health
1024 Rev. Latino-Am. Enfermagem 2013 Sept.-Oct.;21(5):1022-9.
professionals. We recognize that living with SAH is a
complex experience, given the need for medicalization
of life, given the abdications from the everyday, and the
need for interactions with the health-care subsystems
throughout life, to treat the condition or for the care
which is intrinsic to their living conditions. In spite of
the growing interest from research for understanding
the cultural construction of the health-illness process,
there are few current works related to SAH in this
perspective (13-16)
. The scarcity of works anchored in this
frame of reference and the search for answers to our
concerns, which involve how people with SAH think,
feel and do in order to co-exist with the condition and
the search for treatment explain the development of
this work, which aims to interpret the meanings of the
experience of the condition and of the treatment of the
people with SAH registered in a Family Health Strategy
Center in a city in the state of Minas Gerais.
Methods
This is interpretive research, based in the frame
of reference of interpretive anthropology(11), medical
anthropology(12) and the ethnographic method,
ethnography being understood here as the search
for a dense description(11). Ethnography, having as its
principles the prolonged and dialogic relationship with
the interviewees, being open to knowledge of ‘common
knowledge’, in an in-depth view of the context under
investigation, allowed us to decipher the codes which
give meaning to the way of thinking and acting of
the interviewees living with SAH, in a general and
contextualized view of the reality; and which further
allowed the researchers and the interviewees, the
exchange, the involvement, and the transformation of
both. 22 interviewees with SAH participated in the study,
both male and female, aged 18 or over, able to respond
to the questions, registered on the Ministry of Health’s
HIPERDIA computer system, from an area associated
to a Family Health Strategy Center (UESF), as did 10
health workers from the same center in a city in Minas
Gerais. The data was collected in the period April 2010
– November 2011, through: immersion in the field; the
collection of statements; participant observation; field
diaries; and analysis of medical records. The collections
of series of statements were made by the first author
through previously-arranged home visits. The accounts
were recorded on a Powerpack digital voice recorder
and were transcribed immediately afterwards, which
allowed them to be complemented with observations
and notes from the field diary. After the production of
the texts, these were read and, later, compared with
the recordings. For collecting statements, as the basic
script we used the EM(12) which seeks to explain the
illness based on five basic questions: 1) etiology; 2)
time since the symptoms appeared and how they did;
3) physiopathology; 4) the course of the illness; 5)
treatment. Analysis was carried out concomitantly with
the collection, which allowed us to identify contrasts and
similarities, creating reflections on possibilities to refine
questions, deepen them, and to return to the field for
better interpretation of the meanings of the experience
of the condition in the perspective of the person with
SAH. We did the following stages(17): organization of the
data, based on the transcription of the accounts and the
field diary; codification of the data, considering each
line and phrase of the empirical material; and grouping
of similar and contrasting codes to create the units of
meaning, or empirical categories. These categories were
named, using the interviewees’ terminology. We selected
the words or phrases which constituted the units of
meaning, regrouped them according to the similarities,
and codified them with significant expressions which
translate the meanings of the interviewees’ experience.
In this way we constructed the nuclei of meaning, or
analytical categories. As the analytical categories were
created, we compared them against the empirical
categories in the search for inter-relations and inter-
connections. This phase is complex, as, at the same
time as it depends on the lens of the researcher in the
interpretation process, it requires the exercising of
otherness in an attempt to grasp the meanings attributed
by the people with SAH for the interpretation of the
meanings of the experience in the process of becoming
ill. The reflexivity to interpret the meanings in the search
for the significance was guided by the theoretical-
methodological frame of reference, by the ethnographic
meeting, and by means of the understanding of the
interviewees’ historical context, in which the meanings
are produced, seeking to decode them so as to grasp
the implicit meanings in the experience with falling ill. In
analyzing the data, we find divergences and similarities
and, based on the estrangement, it was possible to
understand the other and re-think our way of thinking
and acting. The study was approved by the Research
Ethics Committee of the Federal University of Alfenas,
under process Nº 018/2010. To participate in the study,
the people were advised about the research’s objectives,
anonymity, and the signing of the Terms of Free and
Informed Consent.
www.eerp.usp.br/rlae
 Fava SMCL, Zago MMF, Nogueira MS, Dázio EMR.
Results and Discussion
Of the 22 interviewees with SAH, thirteen were
women and nine, men, aged between 34 and 84 years
old. They were predominantly Caucasian, married and
with children, and most were Roman Catholics, followed
by Pentecostalists. Level of schooling was low, as was the
monthly income: for the majority it was one minimum
salary. Fifteen were retired, of whom four had retired for
reasons of disability. The level of relatedness between
the inhabitants is high, and there is similarity in their life
trajectories; they were born, lived, married and raised
their children in this community, working as builders,
laborers, house-wives and maids. The health workers
were five community health workers, one nurse, one
doctor, one nursing auxiliary, one pharmacy assistant
and one secretary. The data was organized and coded
in seven units of meaning: “Discovery of the condition”;
“The process of falling ill”; “Co-existence with the
condition”; “Coping strategies”; “Beliefs”; “Therapeutic
route”; and “Adherence to the treatment”. After being
interpreted, these resulted in the nuclei of meaning:
“The condition as expression of the way of living” and
“The perspective of cure of the condition”. “The condition
as expression of the way of living”. We observed that
the meanings attributed to the experience of the illness
were marked by the chance nature of the discovery of
the condition, which explained the anger and mistrust
in the light of the diagnosis of the condition. [...] I feel
a victim of chance. I went to the outpatient department for a
consultation about something else and during the triage they
checked my pressure and asked me if I had high pressure, and
I said not, because I’d never felt anything, and that was when
they labelled me as hypertensive, my pressure was 17/11, I
didn’t feel anything. But I was going through a lot of emotional
problems (Wellington, 54 years old). Others, on the other
hand, in the face of the perception that something is not
right, break the silence of the assymptomatic illness(3)
because of the presence of unspecified manifestations
which constitute cultural and symbolical forms of the
experience they are living through. We notice that some
dimension of the corporeality was compromised as a
necessity for them to re-affirm the condition(18), as we
observe in the account: [...] I felt bad, weak, dizzy, general
ill feelings, head-ache, I didn’t know it was my blood pressure,
I thought it was anemia [...] so I went to the doctor at the
clinic and they said it (pressure) was high. (Maria Aparecida, 55
years old). Nervous problems constituted the nosological
category for the social group researched, disparate from
the findings in the literature, and culturally molded by
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1025
how they perceive, experience and deal with it [...] it is
a nervous problem (pause) it’s from getting really angry. On
my street, it’s too rowdy, too many fights, it doesn’t let you
relax, it’s day and night (João, 79 years old). In relating the
meaning of the word(19) “problem” to the conceptions
which they have of SAH, we can identify similarities,
and such definitions correspond to the meanings which
the interviewees attribute to the condition, something
difficult to explain, to deal with and to treat, which are
expressed in feelings of doubt, uncertainty, anxiety and
even fear of the condition. In relation to the causes,
while for biomedicine these are related to malfunction
of the blood vessels, the heart and the blood(1), for the
interviewees they are related to nerves. The urban
way of living constitutes the principal determinant for
nerves. We learnt that the nervous problem incorporates
a series of afflictions in the symptomatology and in the
etiology and which are reflected in the experiences with
the problems of everyday life, resulting from: financial
difficulties; worries about the family; social isolation;
problems from illnesses; alcoholism; marital and family
conflicts; the loss of loved ones; dissatisfaction with the
formal health system; the process of acculturation; and
problems in the street. Our interpretations are in line
with the conceptions of the author(12), in considering the
condition as a somatic way of experience and social
suffering. It translates how a person experiences their
sorrows, and their social suffering, which includes any
type of problem. Nerves, at the personal level, represents
a set of manifestations resulting from psycho-biological
phenomena – and such manifestations suffer a cultural
influence, as it is in this field that the stressing agents
are perceived, labelled, explained and evaluated(12).
Regarding the complications, for the people with SAH,
these are infarction, strokes and sudden death, while
for biomedicine, these are cardiac insufficiency, renal
insufficiency and the cerebrovascular accident(1). The
way that the interviewees – influenced by their socio-
cultural context – co-exist with the process of becoming
ill allows them to express feelings and reactions whose
interpretations are related to resiliency, resignation, low
self-esteem and anger. [...] I think we are like a plant, we
throw earth on it [...], the more we water it, the longer it lives,
and that’s how it is with us [...] you need medicines to preserve
your life, when you care more, you live longer, and that’s how
life is too, you can’t lead it any other way (Manoel, 84 years
old). We recognize that the scars caused by problems in
life which resulted in the nervous problem provided, for
some, a new way of seeing the world and of re-signifying
the care for health. We perceived that the beliefs
1026 Rev. Latino-Am. Enfermagem 2013 Sept.-Oct.;21(5):1022-9.
influenced the interpretation which the interviewees had
on the condition, guided their search for a cure, in the
different health subsystems, and led them to weave the
networks as support for facing falling ill. The beliefs also
explained the living habits, the sexual impotence caused
by the hypotensives, health and illness, the mistrust in
relation to the composition of the drugs, the conception
that medicine from the pharmacy does not cure, and
that what is free of charge doesn’t work.
“The perspective of cure of the condition”. One
aspect which was specific to the interviewees was the
meanings attributed to the objectives of the treatment
for SAH. Their perception of the problem is that it results
from nerves, is symptomatic, and is curable; the
treatment, therefore, according to their criteria, will be
for a specified length of time. Among the interviewees,
there are those who, after stopping with the treatment,
maintain or occasionally present pressure levels within
normal parameters, which led them to believe in the
cure of the problem, as in the following account: [...] so
the doctor told him (the spouse) to take the medicine, very well,
he took it for a few days, he went there, (the ESF Center)
measured his pressure and it was good, so he stopped with the
medicines, because the pressure had got better (smiles). Mine
hasn’t, yet, I don’t know why, but it will! (Gerusa, 60 years old).
We learnt that the knowledges which circulate among
them support behaviors and feelings in the process of
living and of becoming ill. We evidenced that the
experience of cure is shared and influences the
abandoning of treatment. We perceived that the people
with SAH seek a cure for the illness (healing) rather than
a cure for the pathology (curing) (20)
. In spite of the
author’s emphasizing that the objective of curing is the
remission of symptoms, in our study, the cure termed
healing is also obtained by the remission of symptoms,
as the problem is presented in a symptomatic form.
Based on the data found, we recognize the importance
of valuing the knowledge from ‘common knowledge’ on
the experience of falling ill, with a view to facilitating the
process of interaction and the negotiation of the
therapeutic plan. In comparing the EMs between the
health professionals and the people with SAH, we
observe that for the former, the condition is a functional
interpretation, while for the latter, it is a symbolic
interpretation, a harm which is more existential than
functional. There are also divergences in relation to the
treatment’s goals and the evaluation. The divergence
between the different points of view can negatively
1
‘Blessing’ in this case is a simple ceremony performed by a local person regarded as being a ‘healer’. Translator’s note.
influence compliance with the treatment, satisfaction,
and use of the health institutions(20) and also leads them
to a low perception and to greater vulnerability(21). In
understanding that the nervous problem constitutes a
harm whose nature is more existential than functional,
we understand that different needs were compromised,
(which led them to seek treatment in different health
subsystems, as much to care for the mind as for the
body. The family health subsystem constituted the
primary source for interpretation of the manifestations
of falling ill, treatment and counselling and both this and
the ‘folk subsystem’ constituted the main supports for
coping with the nervous problem. We perceived that the
practices which are related to folk remedies are desired
and used by the interviewees, because these are the
resource which is the closest to, and is most
commensurate with, the local culture, because of the
sensation of well-being produced by the medicine or
blessings1, because of the encounter with the lay healer,
because of the mistrust in relation to the composition of
the drugs, and because of the difficulty in accessing the
formal health system, as we can see from the following
statement: [...] it’s difficult you know, we have to take care of
ourselves, because there ain’t no doctor for us to see! (Helena,
55 years old). Regarding adherence to the treatment, we
noticed that the main difficulties were related to being
tired of having to take so much medication, the mistrust
in relation to the composition of the drug, the failure to
value allopathy, the toxicity caused by the medication,
the difficulties accessing the health system and the
weak link had with it, the economic conditions, the belief
that anything given for free can’t be any good, the
undesirable effects of the hypotensive medications
which interfere with daily life, socialization and
masculinity, forgetting to take the medications,
hypotensives and alcoholic beverages: a fatal mixture,
illiteracy, disbelief regarding the chronic nature of SAH,
and the postponement of starting treatment, because
one has the rest of one’s life to be treated, so one may
as well start tomorrow. Even considering the difficulties
described for the pharmacological treatment, many
people still do it, even if this is in their own way, because
it does not require changes in living habits, because it
provides rapid relief from the manifestations, and, in
observing that the problem results from nerves,
attributed to the urban way of living, contributes to
attributing the emotional state to the others, and
exempting the sufferer from the responsibility for the
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 Fava SMCL, Zago MMF, Nogueira MS, Dázio EMR.
control of the arterial pressure. On the other hand,
regarding non-pharmacological treatment, we noticed
that pork, pork fat and salt are powerful symbols of local
and regional identity, among others, deeply rooted
among the interviewees, for which reason it is very
difficult to change the living habits. We perceived that
falling ill causes the person to seek different coping
strategies so as to overcome the adversities caused by
the condition and by the treatment. This search is owed
to the fact that the condition constitutes a harm to the
totality of existence, as it is not the arterial pressure
which is an annoyance – rather, it is the totality of the
person which suffers(22). We observed that for the
informants, religion, spirituality and family constituted
the principal sources of support. Religion and spirituality
had a positive influence on the nervous problem, by
providing the ill person with better physical and
subjective well-being; as well as contributing
behavioral changes and health care, they widened the
social network and allowed a re-signification of life. We
noticed that the interviewees’ experience with the formal
health system revealed feelings of outrage, dissatisfaction
and anger, resulting from the difficulties related to the
organizational and functional structure. The lack of
medical attendance was one of the main causes of
dissatisfaction with the health service. As a result of
this, the people are motivated to ‘do it their way’ – that
is, to seek support for treatment in the private/
professional, family or folk health subsystems. [...] there
ain’t no doctor, so if you’re dying, you can’t wait, they won’t
even find your bones, so what are you supposed to do! The clinic
here is too difficult. We go to the hospital, and they send us back
to the clinic, but why go back there? So, we do it our way.
(Helena, 55 years old). We perceive that for
interviewees, “overcoming the barriers”, such
accessing medical consultations or medications, and the
availability of resources for attendance, and “overcoming
obstacles”, not only the geographical distances but
actually getting to the Center constituted, for the
interviewees, great difficulties in accessing the health
service. The beliefs that “what’s free isn’t any good”,
“only something you pay for has value or can resolve
matters”, express very well the mistrust
dissatisfaction with the public health service, and
motivate the interviewees to seek treatment in the
private health network. The feelings of mistrust and
dissatisfaction which permeate the interviewees’ entire
way of thinking lead them to duplication of use of the
health services, as found in another study(23), for
diagnostic confirmation and checking the therapy. The
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1027
dissatisfaction with the care model offered by the UESF
is owed to the fact that they seek a care centered not
only in hard technologies, but also in light technologies(24),
for resolving harm caused by becoming ill which is not
only functional but, above all, the existential. [...] you
need to have plenty of people thinking like this, like you, for
things to change (pause) otherwise (shakes head in negation) it
carries on the same way, it’s like treating cattle, all the same
(Wellington, 54 years old, emphasis ours). Humanization has
been the guiding principle for re-thinking the health
practices, regarding greater comprehensiveness,
effectiveness and access . The uniquenesses in the
(25)
way of thinking, associated with the specific
characteristics of SAH, mean that the people do not
need only physical care, but that they need, above all,
encouragement, hope and comprehension.
to Conclusion
In giving relevancy to the social and cultural
dimension in the perspective of the person with SAH,
we understand that life with the condition is wrapped
in a web of meanings, which we seek to interpret
through the experience of the condition, which enables
us to understand the implicit difficulties in the process
of falling ill and in the treatment. In interpreting
the experience of the condition for the person with
SAH, the following nuclei of meaning appeared: “The
condition as expression of the way of living” and “The
perspective of cure of the condition”. We observed
that the nervous problem constitutes the nosological
category for the social group researched, a symbolic
form of representation which constitutes a harm which
is more existential than functional. Different from the
the
findings of other authors – who state that SAH is an
as
invisible condition which does not threaten identity
and self-concept – we observed that for the social
group researched, it is a visible condition, translated
culturally by subjective and objective manifestations,
resulting from the urban way of life. We perceived that
the causes which are related to the problem reflect the
life history more than the histories of the condition.
The causes of the nerves, the beliefs and the presence
and
of the problem, which change the person’s relationship
with the world and with themselves, through the need
for adaptation to the new conditions, lead the person to
re-signify life with repercussions on the reconstruction
of the self-concept and identity. They are supported
firmly on the belief of the cure for the problem, however,
the recurrences are anticipated, as the external factors
1028 Rev. Latino-Am. Enfermagem 2013 Sept.-Oct.;21(5):1022-9.

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Received: Nov. 27th 2012

Accepted: July 15th 2013

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